I'm not managing so well anymore

[Wednesday]

I am finding it harder and harder. I’m told I’m positive and resilient and maybe I have been. I’ve managed with the help of AD’s to get through. Now I am so ill I can hardly get out of bed. I spend too much time in hospitals and around doctors. Yesterday I saw a public hospital doctor that seemed to take delight in making me feel like a nuisance. He smiled and made smart jokes with his junior doctor at my expense. He didn’t listen he was so horrible and rude. Too many health issues, too many medications and too many doctors.

I have such a little quality of life. While not suicidal now, I am incredibly sad and can’t see a way out of this. The medications I take for auto immune disease have destroyed and made unrecoverable my immune system. I knew this when I agreed to take them, but I didn’t realise that it would mean I would always have some sort of infection, like last week’s pneumonia. Of course antibiotics are no longer useful and I can’t develop any new immunity. A trip to a coffee shop can send me back to hospital.

My friends and children are lovely but dispersed and not close by. I don’t say a lot because well it’s bloody boring and I’m sure it is more than they all need to know about. There is nothing anyone can do. They try with their suggestions of a new exercise or superfood, this dosen't help. They don't listen, it's too complicated so I don't bother explaining. I get comments like oh yes xx had pneumonia and they are really well now. that's great for xx. Or if you follow this exercise routine your blah will get better. If only I could get to the gym I would be there twice a week. Or take magnesium etc, yep I know all this. I know they are flailing around and trying to help but it feels like they are out of their depth and just saying things that aren't helpful. I don't stop them or try to explain anymore. Over the phone they can't see me so its easy.

My partner is away and to self involved when he is here to understand what I am going through.

I’ve been so independent all of my life from when I was a child. I don’t know how to manage this, how do I get a life? I’ve tried joining classes but I end up getting ill and not being able to attend. Maybe this really is as good as it gets and all the doctors and medicines in the world are not going to make me well.

I guess that is the outcome that I need to come to terms with. I've always believed in quality over quantity.

I’m sorry, I just needed to get this out.

[Lost_Girl]

Dearest Ava,

I really feel for you both for the medical side of things but very much for what you endure emotionally as well. I wish P's family could all know you as we do so those lovely grandkiddies could spend more time with you.

I see you sprinkling wise advice and care around the forums and it warms my heart. You are so kind and generous and well loved here.

Taurus had wonderful advice regarding mindfulness and grounding. It is a great way to calm and reset oneself when anxious or overwhelmed.

I did have an operation, 4 procedures at once. It has been a few weeks and I am slowly recovering, not so much to feel the benefits yet but I am still hopeful.

The time between specialists is maddening. Waiting 3 month like you say without progress and change and it feels like life is bypassing you. I hope you can try and find something to fill in the gaps. Your knitting sounds perfect - full of love as it should be.

Are you getting out of the house much lovely? I do find being outside to help my mood. Do you find the same?

Gentle hugs and much love to you xx

[Croix]

Dear LG (excuse me Ava while I natter to LG)~

I'm glad you are out and recovering. It took me around 6 weeks for most of the swelling to go down and be comfortable (was ok before that but by 6 weeks the after-effects were pretty well gone)

It took longer for the full benefit to become apparent, but was worth it, I hope you find the same.

As an aside in my initial examination the specialist gave me a paste to deaden the nasal passages, it had the effect of making me talk my silly head off - my wife was most amused as I recalled events never spoken of before 🙂

Croix

[blondguy]

Hey Ava

A Happy Mothers Day to YOU!!

I know that you are hurting

Just my best for you Ava

Hugs

Paulx

[Lost_Girl]

Hey Croix,

Thanks for the reassurance. It is good to have a timeframe to estimate things against. I really hadn't expected the pain to be so excruciating for my throat. It hurt to swallow water! I lost 4.5kg in 2 wks as a bonus though. The nose aches and my ears still have pain but they are bearable.

I bet your wife was delighted, your tales are always worth listening to.

LG xx

A few weeks still before my post op checkup. I think it is all going ok though.

Thanks for the support, it means a lot.

[Wednesday]

Dear Paul.

Thank you so much for your post, you're such a lovely man. It's a tiring life isn't it? I hope you are in a better space than you have been.

Hugs, xx

[Wednesday]

Hello dear Carol,

Four procedures! My goodness you have had a rough time. I guess while they had you tired down they decided to do everythingI hope the pains are easing and the result will be perfect. I'm not sure I'll try your diet though!

I get out a little but its difficult. If I have a car I can get places. Walking is a trial and I don't want to lose muscles so I have to keep trying. The distances I can walk are quite small these days. I panic a bit that I wont be able to get bak to the car, but I always do. I see a surgeon next month so that may help clarify things.

P is away, with the car for the next few day and it fills me with dread. Silly because I can of course call an Uber! My thinking is all over the place at the moment. I guess it will change as these things do.

Hugs, xx

[Wednesday]

Happy to have you on my thread for any reason!

Hugs, pats and tickles to whoever needs what. xx

[Lost_Girl]

Thanks Ava, I hope so too. I hope that the surgeon next month can help provide a way forward.

I am glad you are getting out a bit. Yes Uber is handy but I understand it is different when it is not your partner.

I wish I could stick with the diet but thankfully I can expand the selection a bit more this week.

Hugs xx

[Guest_9809]

Dearest Ava,

I know I havent been around much lately, but I do still think of you my friend, every single day.

Keep persisting with those short walks as much as possible, but stick to areas where trip hazards etc are at a minimum. And dont push yourself too hard, have plenty of breaks if you need them when going places. We dont want you tripping or falling and doing more damage, now do we? I expect P would be back home again by now anyway, so perhaps you are no longer relying on Uber. Does he ever suggest you both go out for coffee or lunch together, or maybe even a shopping trip, when he is at home?

I understand your frustration with all the medico's. But hopefully your appointment next month with the surgeon will result in some solutions, or partial relief at least. Hang in there Ava, medical science is an ever-evolving and constantly improving thing. But of course, you know that. You are probably like an encyclopedia of medical knowledge. Through necessity no doubt.

Thinking of you ... always, with much love and affection.

T xx

[Croix]

Dear Ava~

It's nearly tea time and my (28yr old) wife is trying to shoo all the animals outside, for some reason they feel that meal time applies to them, and the staff should wait their turn and have any leftovers they deign to leave (which would not be many, greedy little so and so's).

I'm sure Curly dog has no such bad habits and is a model of politeness, restraint and grace at other peoples' meal times. Please award a well-deserved pat.

I see you've being giving support, but how are you getting on? The last time you were a tad overwhelmed with the medical scene, are things a little more straightforward now? The medical profession is sometimes a bit like a bunch of aliens, and as hard to understand.

So a fresh Ava/Wednesday bulletin when you felt like it would have a rapt audience

Croix